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A youthful take on the pandemic

Date Released: Mon, 11 November 2013 11:00 +0200

WHEN, as a first-year student at Rhodes University in 2000, Rebecca Hodes and a friend established an association called SHARC (Students HIV/AIDS Resistance Campaign) to provide students and staff with badly needed information on the transmission, testing and treatment of HIV, she had no idea that about 14 years later she’d return to the Eastern Cape to, in a sense, continue this work — thanks to a grant from the International AIDS Society.

Hodes, who is now a medical historian and postdoctoral fellow at the University of Cape Town (UCT), was awarded the Collaborative Initiative for Paediatric HIV Education and Research (CIPHER) grant at the seventh International AIDS Society Conference on HIV Pathogenesis, Treatment and Prevention in Kuala Lumpur, Malaysia, in July after having delivered a research proposal that focuses on HIV treatment for South African teenagers.

The grant will be used to fund a two-year study undertaken by Hodes and “a remarkable team of collaborators” — including academics from UCT and Oxford University, government officials, members of the United Nations Children’s Fund (Unicef), nongovernmental organisations and communitybased organisations — in the Eastern Cape from next year.

Shifting the focus away from well-resourced, metropolitan centres to marginalised, rural environments, the study will investigate how adolescents experience antiretroviral treatment and sexual and reproductive healthcare. The objective of the research is to establish ways of improving low rates of adherence to treatment among adolescents, and to recommend these to policy makers.

“We’ll examine the ‘lived’ experiences of the HIV-infected teen generation, who are known as ‘Thabo’s babies’. They’re those who’ve always lived with the disease; many have been on treatment all their lives but some don’t even know details of the infection,” says Hodes, who has a BA and BA (Honours) in history from Rhodes University, and graduated with an MSc in the history of medicine, science and technology and a DPhil from Oxford.

“Our research will deal with sensitive issues of disclosure and awareness, and positive prevention among youngsters who have now reached sexual maturity. We want to find out what they understand, know and experience, and whether there is misunderstanding and/or a lack of knowledge. We want to learn about the challenges they face and establish how best to communicate with them.”

Hodes — who was born in the year (1981) AIDS was first recognised by the US Centers for Disease Control and Prevention (“It was a sign,” she jests) — first became interested in HIV research when she discovered, during orientation week, that the campus’s HIV awareness initiative didn’t extend beyond “the dozen or so T-shirts that SRC (student representative council) members were wearing”.

Over the months that followed, Hodes and a friend started SHARC, which was based largely on the Student HIV and AIDS Resistance Programme (SHARP) model at UCT.

“SHARC put racy jingles on RMR (Rhodes Music Radio) and distributed many thousands of condoms. Previously, the only places condoms were permanently available were at the San (sanatorium), which was too far, and the library, which was an unlikely venue of choice for couples during sexy time.

“We held workshops and parties and speaker events and marches. We made an action plan on how to properly use a condom, and organised the first HIV awareness week held at Rhodes with free testing offered at the Union building. In that week, 271 people tested — more than had cumulatively tested in all the years the test had been available at the San,” she wrote in Grahamstown’s Grocotts newspaper shortly after the campaign took off.

“It’s impossible to know whether our work prevented any HIV transmission or encouraged anyone to test or seek treatment. But if the health of a single person was improved through our efforts, then they were worthwhile.”

Thus began Hodes’s career, which has extended well beyond academia with involvement in numerous HIV/AIDS advocacy projects off campus. After completing her first two degrees, her doctoral thesis at Oxford addressed HIV on South African television. It became a manuscript for a book with the working title, Broadcasting the Pandemic.

In 2009, Hodes headed the Treatment Action Campaign’s policy, communications and research department and, in 2010, began a postdoctoral fellowship at UCT’s AIDS and Society Research Unit. She began a second postdoctoral fellowship at the Institute for Humanities in Africa last year.

Hodes has also conducted extensive research on sexual and reproductive health in SA, including a report on HIV, abortion and reproductive healthcare for women, which dovetails neatly into her forthcoming research.

“In some ways, this is the strongest component of the CIPHER-funded project in that we are focusing on the sexual outcomes of HIV-positive adolescents,” she says.

The exact parameters of the research came about after extensive discussion with various people and organisations working in the field of HIV/AIDS treatment, particularly in the area of support for families and AIDS orphans. Infected youngsters were growing up and Hodes recognised that it wouldn’t be enough to offer HIV-positive adolescents support if their problems, perceptions and requirements were not taken into account.

Unicef says Southern Africa is home to 1.2-million HIV-infected adolescents whose long-term health depends on their strict adherence to antiretroviral therapy. “But HIV-infected teenagers are like their contemporaries; they take risks and experiment,” says Hodes. “As such, they represent an especially vulnerable and challenging group for HIV service providers. Although the number of eligible children receiving antiretroviral therapy has increased in African countries, research indicates that adolescent users of antiretrovirals on the continent show low adherence and have poor access to sexual and reproductive health services. And, while the South African government describes the antiretroviral treatment roll-out in the country as a success story, ongoing studies show that this roll-out has been problematic, especially in poor and rural areas.”

Among the outcomes Hodes is hoping for from the research is a range of effective, youthfriendly support tools, which will be designed in conjunction with teenage participants and tried out at clinics and support centres. She also hopes the study will bring the real “lived experiences” of youth onto the table when it comes to policymaking in future.

“We are focusing on the health needs of young people growing up in contexts of extreme risk but, despite the crucial role HIV-positive adolescents play in preventing the transmission of HIV, very few programming approaches have been led by youth themselves. That’s what we plan to do in the Eastern Cape over the next two years, and we hope that this will have a significant impact on future approaches and policies.”